March is known as Women’s History Month. March 8 is also International Women’s Day. In somewhat of a strange way, I couldn't help but think how ironic when I received notification on March 1, 2023 that our Founder, Joan Stackhouse had passed away.
Diagnosed with myasthenia gravis in her twenties, mother to 2 babies at the time, living life as a missionary in West Africa, she pioneered the unknown. She saw a need for support, she gathered those around her and jumped in to establish what has become a grassroots, boots on the ground support system for many impacted by myasthenia gravis.
You've likely read part of this story before but it was some 18 months ago that I was in my kitchen and saw her name come across our work caller ID as I was preparing dinner. What followed were many phone conversations, cards exchanged and an in person visit to see Joan and Reverend Bill in March 2022. The visit will forever remain one of the most cherished days of my career and my life. To be able to see and hear Joan's vision as I sat next to her was beyond meaningful. To be able to see some of the art she had painted that hangs at the Monte Vista Grove Homes in Pasadena, CA and to hear stories of how she overcame the everyday challenges of myasthenia gravis. On this particular day, I felt it was a privilege to be in the myasthenia gravis sisterhood with her.
Joan was 90 years old when we met. She was sharp, witty and had an impressive memory. In fact, I found a note in my phone recently of people’s names she recalled and had inquired about. We shared many a giggle and I learned she loved the color teal. She had a spark about her and her passion to connect was very much alive.
As we met that day, she shared a fresh avocado from her son's tree that she carefully sliced with a knife. As we snacked on the slices, she quizzed me about the Myasthenia Gravis Association. You can bet anytime I see an avocado that memory flashes across my mind and I smile.
Joan told me that when she and Reverend Bill moved to the East Coast about 5 years after founding the Myasthenia Gravis Association, then 3 kids in tow, her myasthenia gravis somewhat controlled, she knew they had left the organization in good hands, therefore she did not need to check in often. Part of me wishes when I started at the Myasthenia Gravis Association in 2017 that I would have made a more concentrated effort to locate her and connect. As we wrapped up our visit last March I told her I'd be back for another visit. Unfortunately that didn't happen. Time is a thief.
The Stackhouse’s life was filled with service, care, gratitude and generosity. Some would say that is obvious with their history of founding of the Myasthenia Gravis Association. However, within seconds of meeting Joan and spending time with she and Reverend Bill last March, I could actually feel and witness what they had given.
Joan embodied warmth and strength. She fought myasthenia gravis most of her life, but it didn’t define her. She was an artist, a nurse, a mom, a sister, a grandma, a wife, a philanthropist, a leader and an innovator. Joan blazed a path before it was cool for women to blaze a path. She didn’t let barriers stop her. I will forever hope I can be like Joan.
